Newly Diagnosed, 22 and a Student Nurse

Hi,

This is my first ever post and it's really to connect with like for like people and to get some advice, hints and tips maybe.

I was diagnosed last week with inflammatory arthritis and am awaiting a consultation with the nurse specialist to start treatment; hydroxychloroquine and either methotrexate or sulfasalazine to be discussed.

However I am only 22 years old and a student nurse myself, unfortunately I started placement 2 days after my diagnosis, therefore I'm untreated and working 13 hours shifts 2/3 days in a row and am suffering.

My symptoms have become gradual over the last 8 months but the biggest deterioration has been in the last 2 months, I know because I've had a few break downs, such as realising that at 22 my arthritis was reducing the mobility in my shoulder to the point I couldn't lift it enough to brush and put my hair in a ponytail... at 22. I'm coping now but working on the wards means I don't have the time to effectively pain manage and I was looking for any help, suggestions, some advice and maybe a little hope (because I think I'm struggling at the moment) about coping with these shifts whilst I'm untreated. My next concern is that when I do start treatment I've heard that can make you unwell to begin with... is it realistic to think ill still be able to continue placement?

Sorry for the long post and I hope i'm doing this right XD

Thank-you in advance

Siobhan

13 Replies

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  • Sorry I do not know your full condition. Could you ask your GP for a Pain Management course.?, or even the RA Nurse may be able to help you.

    It will take time for the DMARD medications to kick in and possibly they may eventually try a course of BIOLOGIC medications. You may also consider that you will need pain medications not forgetting NSID drugs for reduction of swollen joints. A Pain Clinic will train you in managing your drugs. Possibly a course or sessions in relaxation techniques can be offered. Just thoughts although all this may help you

    BOB

  • Continuing with your placement at this stage is a big ask but I reckon you should go for it if that's what you want to do. A big part of living with inflammatory arthritis is the adjustment and you'll have to adjust quickly. It might not work out, but there again, it just might.

    I was one of the lucky ones who experienced no ill effects whatsoever from the DMARDs initially. Methotrexate, which gets a bad press, was for me a feel-good drug. I hope it's the same for you with whichever drugs you start on. DMARDs do take a long while to take effect however, so you may well be offered a short course of steroids and / or steroid injections to tide you over that interim period. I've never had problems with them either.

    As for coping with pain while working, possibly NSAIDs might be the answer. I think most rheumy departments will go the extra mile to help those that are keen to keep working, so prioritising pain management is something you shouldn't be afraid to ask about. I find exercise helps a lot, but realistically you might be strapped for time. In my opinion it's a good idea to exercise as much as possible, but when it's not possible you might have to be very forgiving of yourself ..... i.e. collapsing into bed when you need to without an ounce of guilt. Do what you have to do, it's part of the fight!

    Oh I so wish you well. I hope you have a wonderful career ahead even if some changes have to be accepted along the way. Don't feel bad about tearful times .... it's par for the course and does not mean the disease is winning, not unless you chose to see it that way.

  • I was in your shoes 20-odd years ago, having the first signs of the disease & doing my nursing training. I wasn't fortunate enough to get a diagnosis though. My sore knees were attributed to all the manual lifting we did in those days & my sore hands to having them in & out of hot water all day! I took what were then regarded as normal doses of NSAIDs (but would now be thought of a poisonous) and struggled on for a bit before switching my qualification to Mental Health rather than Adult nursing, since at least parts of MH are less heavy. I qualified and nursed in total for close to 20 years before I had to give up. By that point I was working in high dependency care of the elderly. It's quite hard to go to work to fasten buttons, tie shoelaces, take tablets out of packets & cut up food for other people when you can't do those things for yourself.....

    How this all goes depends to a great extent on how you react to the drugs - what side effects & how bad & what positive effects. People have different experiences. It might be sensible to arm yourself with prescriptions to deal with common side effects - nausea, vomiting & diarrhoea - so that you can jump on them quickly if they start.

    I'd suggest talking to your tutor if you haven't already and Occupational Health at either your Uni/college or your placement. (I'm so glad I didn't have 13 hour shifts to contend with back in the day - 7 1/2 was definitely long enough.) I know you have certain numbers of clinical hours you need to complete but maybe they could arrange for a bit of leeway for you just until you get stable on meds? You might also need an agreement that you can go for breaks at set times so you know when you'll be able to take painkillers etc. or just when you can have a rest. They have to offer that sort of arrangement to nurses on insulin & other meds so I hope they can do it for you.

    I nursed undiagnosed & untreated, misdiagnosed and undertreated for a lot of years. I hope that you can find a way if it's what you really want.

  • Oh gosh my poor girl, I couldnt work 13 hour shifts like you, I was a 37.5 hour hospital Pharmacy Tech when first diagnosed, only 7.5 hour shifts though my knowledge of meds may have helped a little.

    It is important to pain manage in this condition, I dont know your medical history, but assuming no asthma or stomach problems, you could take ibuprofen 400mg eight hourly consummed with food, so surely you have time to fit one dose in with food during or at least immediately before shift and you could take 2x paracetamol at 4 hour intervals during shift( max as you know 8x 500mg tablets in 24 hour period).

    As per meds for arthritis" dmards" generic name for the ones you describe, different ones suit different people, and some people have little or know side effects.

    Methotrexate is taken weekly either by oral tablet or injection, it is the most commonly chosen, the others are taken in daily dose form., all these tablets take about three to four months to work, but it is common to prescribe steroids whilst they work which really do help, all medication can have risks as you probably know, but the benefit or reduced pain and increased mobility outways this, and you will be monitored.

    Whilst waiting for a decision on dmard (arthritis drug), discuss pain relief with you gp, or your hospital pharmacy staff.

  • I'm 20 and a dental nurse and I work full time 5, sometimes 6 days a week. It is difficult and I find that when I finish for the day I'm completely exhausted and in a lot of pain.

    When I started sulfasalazine I got unwell with a sore throat that literally felt like swallowing shards of glass for about a month so stopped taking it but the hydroxychloroquine hasn't really given me any. But then it hasn't really helped my joints either.

    I think the best idea is to explain to the nurse in charge that you have this condition and that you would like to continue but it needs to be less strenuous until you're treated. You could maybe try splitting the shifts up?

    I've heard it's usually the methotrexate that makes you feel unwell so try taking it on a day where you won't be in work until a day or two after.

    What I want to know is, why didn't they start you on treatment at your diagnosis?

  • Hi so sorry your going through this I would also suggest you discuss this with your tutor and ward manager you may be able to do shorter shifts.you may also be assessed at uni for equipment that will help with your academic work.. Don't despair it does get better carry pain relief in your uniform pocket get a foot spa for your feet a wheat bag for your shoulder. Your nursing career ifs not over you just adapt. I have found that since my diagnosis I :) ave more empathy for my patients who suffer from chronic pain so always be positive. (Know that's hard right now)

  • Hi chick and welcome. I too am relatively newly diagnosed ( started meds Oct 2014) am struggled to begin with.. I am a chiropodist and needed to keep on working, and luckily have managed to do so and I did have a few side effects of the drugs at the beginning- but they are far outweighed by the benefits they have given me. I always have ice and heat packs ready for sore joints at the end of a long day, and they help. What you will find on this site is a lovely bunch of people who will be able to answer most of your worries and have more experience than I do. I certainly couldn't have managed without their help, esp at the beginning when I was so scared of the future. X

  • Well I am sorry that you developed RA at such a young age. I take oral methotrexate 15/mg per week, Celebrex when needed and 10 mg of prednisone, but I am still having issues. I am constantly nauseous and since I have to blame something, I am blaming the MTX. My father also has RA and takes MTX without issue. Hopefully, I haven't confused the issue too much.

    I hope you feel better.

    Bob

  • Hello!

    Welcome to the forum, I'm fairly new here too! Everyone is really helpful so you've come to the right place. I'm sorry to hear things are difficult at the moment, having these problems is really hard to adjust to. I would say to listen to your body and just see how you get on. Good idea to see what extra support you can get from your uni and also from your own medical support team. It's credit to you that you want to keep working but just take care of yourself too :) whatever you end up doing it sounds like you've got a great attitude and I think that's half the battle :) x

  • Hello, I'm sorry that you have had your diagnosis. I was a student nurse when I had my RA rear its ugly head again and has stayed ever since. Firstly, you must go to OH, as you're at risk and also your patients while you're waiting for your meds and currently untreated. It is to safeguard you most of all. They may also be able to recommend 8 hour shifts, which may mean working over more days or something else. You may also consider a break until your meds are working, I did that and found it the best option, I took a break for 3 months and joined the next cohort.

    Your meds will take a while to work, but don't give up hope, as I managed to qualify and work for 8 years before retiring on ill health. You may not have to do that, stay positive but get advice from OH, your GP and if need be the RCN as well.

    Good luck!

  • I feel your pain. I have psoriatic arthritis and I'm only 29 (and looking 14 doesn't help my case either ). I was diagnosed early last year and only found this forum accidentally but it's proved really interesting and helpful. Though technically I'd had PsA for years but what with everything else wrong with me, it seemed trivial. Until my knees started giving out on me. Not sure what I can say about your work but on the side of pain, the best thing to do is hang in there, the docs will do their best and it's all trial and error with the different medicines. As I'm slowly finding out. Good luck. :)

  • Dear Siobhan, it's great to see so many on here giving you great support which I hope has helped. Remember you can call the NRAS helpline on 0800 2987650 for information on any aspect of treatment and lifestyle etc. of being diagnosed with RA. the suggestion of talking to Occupational Health is a good one.

    We also have great telephone support volunteers that if you actually wanted to chat to someone over the phone who has "been there, done that" so to speak we can match you with someone who has had a similar experience, in fact I can think of one of our volunteers who had almost your exact story and she is now a specialist rheumy nurse so there is light at the end of the tunnel Siobhan.

    NRAS and this HU community are here to help every step of the way.

    nras.org.uk

  • Hi Everyone,

    Sorry it has taken me so long to get back to you all! As I'm sure you will all agree not getting back to you is a good sign, I completed my placement!!! Thank-you all for your support and advice. I decided whilst I was coping I didn't tell my placement and still managed ok. But have taken your advice on board and therefore contacted my personal tutor who referred me to the university occupational health, who have just completed a report. In this they have asked the university to make my future placements aware, they must provide breaks to ensure I can take my medication and pain relief on time and should I have a flare up they are to negotiate shifts more appropriate to what I can cope with, so instead of doing 13 hours days I can do shorter shifts to cope with the fatigue and pain.

    I've started sulfasalazine, I'm still on the incremental doses but starting tomorrow ill be on the 4 tablets a day. I thought this would be best as i'm going to want a family in the next 10 years and whilst there are still side effects with this treatment, I couldn't even consider pregnancy with methotrexate for at least 6months after stopping, so we decided this would be the best choice for me, but are open to the fact that should this not agree with me and my body there is always methotrexate to fall back to. I haven't experienced many side effects, bloating is the main one, has anyone else had this? Unfortunately my liver function wasn't the best before starting treatment so its being monitored a little more closely than normal and there considering I may have a secondary autoimmune liver disease as my lft's have been off since 2009 but at the time I was asymptomatic so no investigations took place. Even if this is the case though, once again i'm on the best treatment already as the nurse told me methotrexate can have an even bigger impact on LFT's, is this something any of you have experienced?

    Overall i'm in a much better place emotionally and physically! looking back, even to this original post I can see that I was suffering from mild depression, I think this was mainly due to the constant pain. Now though i'm on treatment and have experienced a few days pain free! and whilst it was only a couple of days, I think this is a massive achievement as I haven't been pain free in 8 months (I haven't not took pain relief every 2 hours for 8 months!), I feel that there is hope again! I have taken your advice for ice or heat pack, something I read was the use of a heated blanket for my bed to help with sore joints and can honestly say it has been a life saver!

    Thank-you all for your responses they gave me hope when I wasn't coping! I can see this is a community i'm going to refer to for years to come! I Definitely couldn't have managed without your advice!

    Siobhan

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